Advanced Prostate Cancer

What happens in the very end stages of Metastasized Stage 4 prostate cancer?

What happens in the very end stages of Metastasized Stage 4 prostate cancer?

quora.com/What-happens-in-t...

Gary Larson, MD - Have Treated Over 10,000 Prostate Cancer Patient

I currently have a patient taking the equivalent of 3,500 percocets per month to control the pain from stage IV prostate cancer. (1) PEOPLE ARE FOND OF USING THE TRITE EXPRESSION THAT MOST MEN DIE WITH PROSTATE CANCER RATHER THAN OF IT. THIS IS WHAT IT CAN BE LIKE TO DIE WITH IT.

Prostate cancer preferentially spreads to the bones, although now that stage IV prostate cancer patients are living longer with chemotherapy and newer treatment modalities, we are seeing spread to visceral organs as well (lung, liver, brain, etc.). They also have more time to develop the conditions described below.

Bone metastases are usually asymptomatic when first discovered, but over time, they erode the healthy bone, destroying nerves, and causing excruciating pain. Men will often have dozens or even a hundred metastatic sites that each hurt just like a broken bone, not to mention compressing spinal nerves, causing pain in the entire distribution of those nerves. Some bones do break in the process.

Skull base metastases deserve special mention. Compressing the cranial nerves as they exit the skull base, may paralyze cranial nerves causing the inability to use the eye muscles, facial muscles or swallowing muscles. If one’s facial muscles are paralyzed, they can’t blink, which leads to keratitis and blindness (unless the eyelid is partially sewn shut - or weights are surgically implanted in the eyelid to allow it go down all the way. If one can’t swallow, they need a feeding tube (these men are fully awake and functional, but will starve to death without the ability to swallow food - not the situation where a feeding tube is placed to keep comatose patients alive, which is a completely different issue). Not being able to swallow saliva means they must spit 1–2 liters of it every day, or have a fistula placed so it drains out of their neck. Compression of the trigeminal nerves cause pain in the distribution of that branch or branches - it’s like having a toothache in all your teeth at once - or that same intensity of pain in the upper part of the face.

While cancer spreads to the rest of the body, it’s also progressing in the pelvis, where it started. Bladder invasion causes intractable spasms and a constant painful feeling of needing to urinate. A catheter becomes necessary - usually placed through the abdominal wall directly into the bladder, which is less uncomfortable than having it go through the penis for months or years. The cancer can grow posteriorly to close off the rectum, requiring a colostomy - or just causing death from peritonitis. (A colostomy doesn’t do anything about the constant feeling that you have a butcher knife stuck up your ass.) Obstruction of the ureters requires nephrostomies (urine draining out of the back - from where the kidneys are). A well informed patient may refuse nephrostomies and die a relative painless death from renal failure in the next few weeks or months.

What about Hospice, you might ask? Hospice is generally reserved for patients with a 6 month life expectancy - these men may live for a year or two with these problems.

Not all patients get all these symptoms, but just pick a few of them and imagine living with them for 2–3 years.

Many men who die “with” prostate cancer may have liver failure, bone marrow failure, heart failure, renal failure, etc. listed as the immediate cause of death on their death certificate. Listing these diagnoses as being secondary to prostate cancer may or may not result in them being counted as a prostate cancer deaths.

The 27,000 men officially listed as dying FROM prostate cancer last year may, in many respects, be the lucky ones. They have come to the end of living with it.

You can see why I support PSA screening for prostate cancer. 90% of the men who are cured of prostate cancer had their disease caught early by screening. Those who don’t are playing Russian roulette with fate described above.

It may be necessary to place a weight in the eyelid or sew it partially shut due to facial nerve paralysis caused by skull base metastasis from prostate cancer.

A nephrostomy tube placed due to kidney obstruction by prostate cancer.

Spinal fractures due to prostate cancer.

Aside: I didn’t mention the morbidity from treatment - living without testosterone for years, side effects from chemotherapy and a variety of newer side effects we are discovering from the newer drugs that are now available to treat prostate cancer.

(1) 320 mg of oxycontin per day + 240 mg immediate release oxycodone = 560 mg/day X 31 days = 17,360 mg/month - which is the equivalent of 3,472 Percocet-5’s per month.

110 Replies
oldestnewest

I pray that my husband or nobody will ever get to that point with their cancer. Very scary scenarios. I understand we can not stop things from happening but for now, everyday it's a victory🙌

6 likes
Reply

This is an insane post.

2 likes
Reply

not that insane, i just went through 7/8ths of it with my dearly departed husband, from the day he took his last long walk out to our pond to fish to the day he passed....95 days.

he was diagnosed 13 years ago.

2 likes
Reply

So sorry for the both of you. He is at peace now. Thank you for being strong for him. May you find happiness.

4 likes
Reply

as far as this being a ''negative article'' it's not. had i known, i would've insisted they let him go on as much morphine as they were willing to give him. instead, i pushed on, insisting he keep fighting...for me, now that i've read it, more than for him. my ability to grieve for him jumped instantly into the anger stage because no one ever told me it would go that route. after reading this, i now feel guilty for insisting he keep trying. he's only been gone a month, now, and to whomever wrote this, i am grateful. he was no quitter, life just quit HIM.

5 likes
Reply

Please, you have no reason to feel guilty. You did the best you can for your husband with the knowledge you had. What more can any of us do? My wife is doing the best she can for me. Like you she is human. She will make mistakes. But they will be made out of love and the desire to do the best she can for me. That is what you did.

I hate this disease. Not only for what it does for those that have it, but for the people around us. Please know that my prayers go out to you, strong caregiver.

8 likes
Reply

i hate this disease, too. i also think doctors have a duty to tell us what will happen, so we don't regret anything we do or say when the end approaches. i thought i could make him mad enough to fight...if not the disease, at least fight me.

3 likes
Reply

I just read an article about men who wait too long to start hospice care and don't get the full benefit. Here's a quote from the article: "As doctors, we often don't want to give up," Litwin said. "We've sworn to help our patients, and a death is a failure to us. But the optimization of life should be our goal. Sometimes survival is of such poor quality that it should not be our primary goal."..."It's important that we maximize quality of life when quantity of life cannot be changed,"

If anyone wants to read it:

newsroom.ucla.edu/releases/...

2 likes
Reply

I look back at my mom's death, and also at my sister's death, and see things I could have done differently. In one case, my blindness to reality. Which I won't go into.

1 like
Reply

Yes, sometimes it is painful to have knowledge. But it is impossible to make good choices without it. I would want to know.

Reply

as a spouse, i would've done things entirely differently, had i known what to expect.

1 like
Reply

Perhaps in an attempt to encourage hope, doctors may give best case scenarios. I think it is understandable but I would prefer to know how to best help my husband.

Reply

Dr Larson who does Proton Therapy in Oklahoma City gives a more nuanced response to a similar question at this link:

quora.com/What-does-a-perso...

It is my personal limited experience in being around only a few men who have died with advanced prostate cancer that there have been multiple factors happening in the few weeks and months prior to their deaths. Not everyone got all the dire effects that could possibly happen. Some men did have some of the precursors that accompany a slower decline that is often associated with many cancer types. Some really didn't directly die of their prostate cancer itself, but as a result of cascading complications from one or more adverse events or side effects from the harder last ditch treatments they tried.

So much of it is unpredictable at the individual level, until it happens.

It further highlights the importance of establishing good Estate Planning Documents of all kinds, well ahead of need, and, in particular, the designation of health care agents/proxies, Medical Directives for Health Care, etc.

Everybody needs such things for family peace of mind.

This documentary film called "Passing On" may also be a good conversation starter for patients and families facing such end-of-life issues.

passing-on.org/

Charles

6 likes
Reply

Thank you Charles.

Reply

Please remove such a negative article from this site. What good does it do to present such a negative picture of last days of care, I know many men who passed with prostate cancer and none suffered to the extent picture in this scenario. We have great palliative care doctors do fantastic job .

14 likes
Reply

Gary Larsen is a radiological oncologist, so I doubt that he treats many stage four cases. Probably scare tactics to promote his business.

4 likes
Reply

Larson apparently does "Proton Therapy in Oklahoma". So he does treat.

1 like
Reply

my husband was stage 4 when they radiated him...initially to the gland and subsequently to many bone mets as they became painful. while i sat waiting for him, i watched at least 4 radiological oncologists have to break the sad news to other patients waiting that they had to quit because the radiation fried other organs. i would think gary larsen knows all too well what end stage is like.

1 like
Reply

"Please remove such a negative article from this site."

Why on earth would you say something like that?

That is sort of like when the Docs and family would hide a diagnosis of cancer from a patient to relieve them of the stress of knowing what is going on.

I suggest that you just cease visiting this link and spare yourself.

8 likes
Reply

Here is a good healthUnocked community that you might like:

healthunlocked.com/positive...

Reply

Well Charles what was your point? I have enough going on without this sh.t. We all know what a bastard this disease is. Thanks for your positive input.

2 likes
Reply

What a rosary picture.!!! Thanks a lot !

2 likes
Reply

How does this article, help me to have a positive attitude? On this forum I always read don't give up, have a positive attitude; there are many treatments still available. I know at the end there is a morphine drip in my arm, and I am in pain, and wasting away. I don't need you to remind me of that fate.

I intend to die with the disease.

Rich

6 likes
Reply

I did that kind of catastrophizing on one of my first visits to the doctor. I ran through everything that was going to happen to me in the worst case. By the time I got through all the terrible things I was in tears. That was a good lesson for me, I'll never do that again. You could start being depressed about that the day you are born.

Live in the present, deal with one thing at a time as they come, no more. Keep that positive attitude, we all need it so we can make the best of every moment we have.

12 likes
Reply

Now I have to wash all those ugly images . Fortunately thats all they are and can't harm or help so into the garbage bin. Still here. Rocco

1 like
Reply

I agree. Fortunately, I stopped reading it after seeing that it was really unhelpful. There are all kinds of awful ways people have died, many are worse than the above posted description. How does reading this help us in any way, even if we will end up going through this? I can't imagine being in hospice care thinking about regrets in my life "Gee, if I'd known it was going to turn out like this, I could have worried about it all of my life."

1 like
Reply

I am one of those who were told that the cancer will win at the end. However, I plan that date to be far in the future, decades. So far so good. Perhaps by then there will be a cure. If not, then perhaps close to the end I will be eaten by a shark. Thank you so much for letting me know what I have to look forward to.

If the goal of telling us the horrors of how we may die was to scare people into getting tested, please know that early testing can not detect all prostate cancers. I had digital exams since I was 40, PSA testing since is was 50. When they finally found it at 58 it was already advanced Stage 4A, T3, N1 Ductal. There are a lot of men here that the early testing felled. Except for the cancer I am in great shape. It is “nice” to read what my future holds because of the failure of 18 years of testing digital testing and eight years of PSA testing.

10 likes
Reply

I too find this post extremely unhelpful. What is the point of posting this?

10 likes
Reply

The doctor was asked a question and he replied.

1 like
Reply

Nice way to start a positive day. LOL. I think we are all aware that the end result of any terminal disease (cancer, MS, Parkinson's, etc.) is downright awful. So not sure what the detail adds.

Sounds like this response was to a general audience as a scare tactic to get checked.

Me I was checked from day 1 at 40, had the biopsies, found GL6 and 2 minor cores of GL7(3+4), had RP, so basically 'on top of it', but here I am with a BCR.

The one number I take exception to is that 90%+ 'cure rate'. Then you hear the 30-40% BCR, that no one mentions. And you dig in the 90% rate and see it is really 90% for 15 yr survival.

If anything, urologists should push PCa as more serious vs. 'eh you have cancer, but if you do X, we could fix that', especially for the lower GL 6 and 7.

5 likes
Reply

SPOILER ALERT - THOSE IN TOUCH WITH THERE INNER SELVES OR SUFFERING FROM ANY FORM OF DEPRESSION, OR WHO ARE JUST PLAIN SENSITIVE ABOUT ANY ASPECT OF PROSTATE CANCER, PLEASE DO NOT READ AHEAD. THANK YOU

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

ANOTHER SPOILER ALERT. IF YOU DO NOT BELIEVE IN OPEN EXCHANGE OF FACTUAL INFORMATION. PLEASE STOP HERE.

.

.

.

.

.

.

.

.

THOSE OF YOU WHO CHOOSE TO OVERSHARE YOUR OWN NEGATIVE EMOTIONS ABOUT YOUR OWN ISSUES... DESPITE YOUR CLAIMS OTHERWISE, HAVE ALL THE SELF ABSORBED CONSIDERATION OF A TUBERCULOSIS PATIENT TAKING A CROSS COUNTRY FLIGHT, OR START YOUR OWN THREAD ON THAT SUBJECT. IF YOU WERE SINCERE YOU WOULD SEND ME A PRIVATE MESSAGE. BUT IF IT MAKES YOU FEEL GOOD TO PUBLICLY "SHARE"... SURE, I CAN'T STOP YOU. BUT I DON'T HAVE TIME FOR YOUR CR*P. I AM GOING TO MOVE ON.

FOR SUCH PEOPLE, HERE TRY THESE GUYS AT BETTERHELP.COM, BUT PLEASE READ NO FURTHER (and if you have off-topic comments about your feelings, why on earth don't you start your own thread, with an appropriate title so I know to avoid it, and stop pissing on this one. Do something positive. Thank You):

betterhelp.com/helpme/

(these are good people, trained professionals, who will take their time and talk to you and make you feel better about yourself)

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

.

I learned something from the article that has informed some of my planning for the future:

1. I need to redouble my efforts to stick to a good diet.

2. I need to be paying closer attention to my BMI and muscle mass.

3. While statistically, I will most likely die from a heart attack or cardiovascular condition, then from metastasizing prostate cancer, I now know what early signs to look for if I see things spiraling out of control.

4. If things start spiraling out of control I may not have the presence of mind to do clear thinking then. I remember the scramble when I was first diagnosed. I could have made better decisions. So I should do my thinking now, ahead of time.

5. In such an event I would very early seek out a Doc that does not have qualms about heavy painkillers (most Docs in today's) environment are scared to prescribe them. Most likely I would pay a visit to Dr. Larson.

6. I would not only make sure I have a good Healthcare Power of Attorney locked and loaded while I was still not too distracted by my condition, I would also have a good talk with the people listed in the Healthcare Power of Attorney about exactly what I expect from them. Often family doesn't do such a good job of following a patient's wishes because this talk is never or done far too early without a situational awareness on the part of both sides in the discussion.

7. I would make sure to keep a reminder in the back of my mind, that if things are getting too intense, I always have the option of just refusing food and fluids. Ultimately I am always in control of my own trajectory.

That is just me. Perhaps others might have other takeaways from the information. But Doc Larson is sharing facts. He is not sharing his internal emotional state.

And why would he do that? And to what end would he do that? Shame on any of you who would deny others this information and in the process share with us your negative emotional state.

AND FOR THOSE WHO READ THIS DESPITE MY ENTREATY NOT TO, PLEASE REFRAIN FROM SHARING YOUR NEGATIVE EMOTIONS WITH OTHERS HERE.

OR IN THE ALTERNATIVE, LIMIT YOUR NEGATIVE CR*P TO A PRIVATE MESSAGE TO ME, SO I CAN TELL YOU WHAT I REALLY THINK. LOL

OR BETTER YET SHOW ME UP BY MAKING REAL SUBSTANTIVE CONTRIBUTIONS TO THE CONTENT OF THIS GROUP THAT SHOW ME UP GOOD. THAT IS SOMETHING I WILL RESPECT... BUT THE WHINING... NOT SO MUCH.

AND AGAIN THERE ARE GOOD PEOPLE AT BETTERHELP.COM WHO CAN MAKE YOU FEEL BETTER ABOUT YOURSELF WITHOUT SHARING YOUR NEGATIVE FEELINGS WITH OTHERS:

betterhelp.com/helpme/

11 likes
Reply

Thank you. We may not like the facts, but facts are still facts and yes every situation is different and we can all hope the we don't experience any of it. The reality I live in, I would prefer to have knowledge of what might be ahead for us. Knowing is much better than the boogie man jumping out to get you from nowhere at the last second. Knowing some of the possibilities ahead of time, you know more of what to look for and use more appropriate preventative strategies. It's okay if you prefer to stick your head in the sand, we are all different but don't sugar coat the truth for me. Thanks

Reply

betterhelp.com/helpme/

Reply

contact@betterhelp.com

Reply

and these guys are good as well: info@online-therapy.com

Reply

I choose to live in the present and not think about how I will die, anyone of us could easily die in a different way, at any time ,and these scenarios are the worst case . Like I say “If we are worried about death, we can not continue to live” When I was diagnosed, the Urologist told me I had a year to live(2006) and said most likely it will be painful. I am still here, and never felt any pain. In fact today, one week out from my first Javenta, I feel better than I have all year. When the time comes for palliative treatment, I will seek palliative treatment, but it is not today.

12 likes
Reply

"When I was diagnosed, the Urologist told me I had a year to live(2006) "

I was told something similar. Yet here I am right along with you. And there are so many others in this world who survive under far worse conditions than most of us.

7 likes
Reply

That's great, 12 years past what they told you! That is something to help me be positive. Thanks for sharing. And you are right, we have so mcuh to be thankful for. That's one of the ways to help you to be happy, be thankful always for everything you have.

6 likes
Reply

I knew of a guy who could hang a fellow human from a tree and gut the person to relieve stress from the impending certain death about to occur but why broadcast such morbid stories.? You nailed it, live in the present and continue to do so. Pain don't hurt. Drive on Dan.

3 likes
Reply

I agree Dan. What's the point in ruining the quality of life you have? imagining every terrible thing that could happen is a waste of your valuable thoughts. You said "It is not today" that's the key.

3 likes
Reply

I have taken a break off this site due to some negative posts which I find distressing. The above post is not something I want to read and I think it is unhelpful for newly diagnosed patients who are in a sensitive state! There is no need to post things like above, if people need information like that let them ask health professionals. Post carefully and think about the message you want to give!

10 likes
Reply

Apollo, You are welcome.

Thank you for the bright light and warm feelings you have shown me today. I will let you be an example for me to follow.

You have a good day too.

Reply

Hi cesanon, your previous posts have been incredibly informative and interesting which is why this one unusual. My wife’s friend passed away of an blood clot which killed her instantly age 42 I’m just glad she had no idea of what she would go through, the pain and suffering. Every human being faces the same outcome eventually which is why I choose not to focus on what can happen? It may seem to some that I’m burying my head in the sand but It’s my choice. I always remember my first reason for searching out the forum and it was to focus on positive stories and people walking my journey. I still have positive thoughts for you and take your survival story as hope for my journey. thanks 👍

2 likes
Reply

Apollo my friend I confess to being more concerned about English rugby than my own health. I am alive, I can smile and give reassurance to my family and friends. I have been with many of my family and friends during their final days with whatever disease they have contracted. My father, a powerful Royal Marine Commando and heavyweight forces boxing champion died when I was 4 from tubercular peritonitis in 1950 wasted away and in great pain. I don't know how or when I will go it will just be my time. God Bless all of us.

1 like
Reply

Why don't we start talking to children early about these things since many will ultimately end up in hospice care with all kinds of end-of-life problems, disease, complications from treatment, etc? Why wait until you are older to be depressed about the end of your life?

The reason we don't talk to them about it is the same reason we don't talk to other members here about it or dwell on it ourselves.

In general, we all know what the end looks like. Unless we are discussing something that is pertinent for us individually, and it is something we can actually do something about, it is unproductive in my opinion.

Basic planning for the end of your life is something everyone should do, regardless of whether you have cancer. Outside of that, just focus on the here and now.

Remember what Mark Twain said: I am an old man and have known a great many troubles, but most of them never happened. Worrying is like paying a debt you don't owe.

7 likes
Reply

Seems to me that a lot of people on this forum don't like the facts of life. I agree that we should all work together to live with ádvanced PCa the best we can, but you know its gonna get us in the end. Removing this post won't change that because its a fact.

I will tell you the posts that I dont like. I hate reading about people that have been on hormone therapy for years and provide encouragement to others that there are hormone teatments first and second line that can extend life. Well as some one who suffers primary castrate resistance I can tell you that I dont like thise posts. They remind me that I have effectively had X number of years taken off my journey and that the end is much closer for me. Sometimes I think that people who have enjoyed a remission from prostate cancer due to ADT are just gloating and I wish they would shut the f up, but I know that is just me feeling sorry for myself.

So for me, I dont mind hearing facts, I would rather that than hear about treatments that dont work (for me). But I would never tell someone to remove a post regarding their cancer remission, just because it doesn't suit me personally

4 likes
Reply

Hazard, I hear what you are saying, Hope is really all any of us have, and to take that away can hurt the outcome. I try to remain positive as I beleive it feeds back on the immune system. How is the chemo going, I wish you continued good results, we are all here for you as we go through this fight together.

Dan

6 likes
Reply

Thanks Dan. I am getting ready for cycle 4 next week. PSA down from 47 to 7.5 after 2 cycles (good news at last), I will have another blood test next week and I am hoping to see the trend continue. Though I don't like using the word hope because hope doesn't deliver results. I just eat well and exercise and take all the enjoyment I can from each day. Lucky I have a loving family who keep me sane.

Regards, Hazard

3 likes
Reply

47 to 24 after one and after 2 down to 7.5, that is certainly good results, Mine bumped up after first, though before long I had a 40% psa response on docetaxol, I suspect it will be down a lot more this next time.It is important to to eat right and exercise, I am glad you have your loving Family for support.

Dan

2 likes
Reply

Hazard, thank you for your post. I agree. There are many posts that are much more difficult to read than this one. I have learning to pass over them.

Reply

When making a post, I always ask myself, what am I trying to accomplish by making this post? I'm not sure what you were trying to accomplish, but maybe it was something that shouldn't have been done. Just a thought.

4 likes
Reply

You know, I have been really over-reactive to some posts, mainly to those who I believe use slight of word to promote a miracle cure with no evidence, but I read this post with eagerness! And was not disappointed. Now, I am not at a sensitive point with my diseases, nor am I fearful of my future right now, but this post did not lead me to those points either. So I did not read the post to apply to myself, but it sure gave me an empathic understanding of those who have and will experience these problems on their way to passing. I now can feel at least partially true guided and informed empathy with those who are going through it now and in the future, and I am a better source of empathy for them. I would want someone to understand what I was going through, not sympathetically, but through an empathic understanding if I was in their place.

We as a species are sometimes too quick to think of ourselves first and stay there and that path is growing in popularity right now. Often, we do not recognize our beast’s affects on those who are close to us. I will miss my grandchildren terribly before I die, but what about their loss? Their pain, especially if they are too young to understand fully. They are often left with a feeling of emptiness and a sense of being cheated, and thoughts of life being unfair. I have thought about this unfair life thing for 50+ years and for myself I have come to accept... Life is fair...it is people and their decisions, their actions, that is often responsible for the unfair part. Sometimes I think that saying “life is unfair” is just an excuse for people to behave badly. So I have come to know that if we do not prepare ourselves and understand them (others) the outcome will not be the way we wanted it to be and they will feel much more pain than we do at the end; and for some time afterward.

5 likes
Reply

Maybe the sufferings to face at the end of the disease as you described are facts. But it will not help in anyway to the people in this community who are fighting this battle with a positive spirit. Your post could only frighten people like me. Kindly avoid such posts, instead give us some positive thoughts and informations.

1 like
Reply

stupid post. what percent of prostate cancer deaths are like this. Unless you include that, this is just a shitty ass post.

8 likes
Reply

Hi Martin

From the title of the posting, you guys knew what is coming, and have chosen to read it all. At the end , it was unpleasant. And now you are saying the info was not helpful.

The posting was very informative and was written for a lager audience.

The article help me to decide at what stage, I should let it all go. I will not live with constant pain, I will quit, when I no longer enjoy living .

4 likes
Reply

This is one of the ways you can die.

Again I ask, what is the percent. Without knowing that, you cannot put this "information" into context.

Compare it to: bones being filled with cancer, and ceasing to produce new blood cells, or earlier, new neutrophils. You die, yes, but not like this.

Another major new development is the transition to NET type of cancer. This represents, by far, a larger proportion of advanced cancer cases than yours.

Or opportunistic pneumonia.

Reply

Marty

Why don't you man up, use your real name, go to Dr. Larsen's post on Quora and give him a good piece of your mind.

Just think how much good you can do by protecting people on Quora from this ignorant Dr. spreading such untruths.

quora.com/What-happens-in-t...

Go give him what for.

Oh and don't forget to include your credentials.

Reply

No, I did not know what was coming. How could I? I read it, and I find it misleading. So should I not be allowed to mention that?

Reply

Nonsense

Reply

my uncle Al died this way, so i know it is a reality, most people like to not hear reality. i was raised a catholic and as a little kid i was required to attend catechism classes where it was instilled in me if you committed a cardinal sin ( such as suicide ) you were going to hell and be treated very badly by the devil from now until eternity . i have outgrown that B/S and plan to commit suicide if it comes to suffering like my uncle AL. i am lucky in that i live in a state ( Colorado ) where you have this choice under these kind of circumstance. i think this should be discussed openly as an alternative

4 likes
Reply

I agree with you Joe. I'm glad this option is also available now in my state, California. We don't let our dogs and cats go through that kind of suffering so why should we make humans?

What I also appreciate about the law is that if you follow it, your death is not considered a suicide which may not be important to many, but it is to me. So for example, if you had a life insurance policy that excluded suicide, your beneficiary would still get the money.

I was with my father all the way through hospice care until his death. It was nothing like above post, not even close. Yes he had some pain, but for the most part we were able to make him comfortable and allow everyone important in his life the chance to say goodbye.

And just like I do right now, we were able to take one day at time, dealing with each thing as we needed to. It was no different, right until the end. Actually, that's where I really learned about that.

No one should be afraid, we will all make it through this process, just as we have all made it through everything else in our lives.

2 likes
Reply

"I'm glad this option is also available now in my state, California. "

One thing I learned from a recent situation with a family member, this option is always available. A person can just consciously decline to take fluids and foods and the hospital will not interfere with that decision.

It is an apparently quick and painless for a patient to elect to end end-of-life suffering and do it without asking permission or going through any legal process.

Of course it only works if you are already suffering from a serious disease. But that is a good thing.

3 likes
Reply

I watched a woman whose husband did this, give a presentation on this option. It was very good and informative. I did cry during parts of it, but all in all it was very positive. It is our choice as to when and how we end our lives here. No one should have to suffer needlessly at the end of their lives. We don't let our pets go through it and neither should we.

2 likes
Reply

Cesanon's post was not about "choosing to die"; it was about "what your future is or could be". Needs to say "how likely" to be of any use at all.

Reply

Martin

How about you making a positive contribution by doing a google search and posting the results back here?

Reply

I am a doctor in Australia and also have metastatic prostate cancer that is at this time androgen deprivation sensitive.

I have worked in palliative care and seen some of the terrible issues cesanon has described.

I disagree however with this being an argument for screening. Screening is not going to prevent most of these appalling deaths. Screening will result in the treatment of a lot of men who were never going to die of their low grade disease.

Many of them will be severely damaged by unnecessary treatment. Most of those treated with surgery and or radiotherapy will not need the treatment and for a large number that do need the treatment it won't be effective.

It is true that some of them will be cured but hardly any.

PSA screening does not get promoted as useful by the Australian medical system and it should not be.

This may change in the near future when higher resolution MRI becomes a reality.

Review of men with high PSA readings then might involve looking for a nodule on MRI then biopsying that nodule.

This is analogous to breast screening with mammography.

If women aged 40 have their breasts randomly biopsied about 40%have DCIS.

(ductal carcinoma in situ). If they were all treated similar issues would occur as now occurs in men with mildly elevated PSAs.

Some of the vested interest colleges in Australia promote PSA screening but with minimal vigour as they know that the evidence for screening is poor.

The Australian system promotes evidence based screening such as PAP smears, blood glucose etc with high quality evidence. Even PAP smear screening which is effective, saves the lives of approximately "only" 200 Australian women per year. (population of 24.3 million) Our new vaccination program for HPV will reduce this even further and make screening less relevant.

PSA screening is not in this league.

It may become a valuable tool but at this stage clearly causes more harm than good.

It is a cheap statement to say that : "You can see why I support PSA screening for prostate cancer. 90% of the men who are cured of prostate cancer had their disease caught early by screening. Those who don’t are playing Russian roulette with fate described above"

I have very extensive bad disease.

Lets get the treatment algorithms sorted out and stop berating men to be screened until there is a evidence of real efficacy.

Non scientific, irrational , faith based arguments won't wash with me!

10 likes
Reply

Thanks, that's a rare opinion to hear. In the US, it seems like everyone is in favor of PSA testing even though it results in a large number of over-treatments. The largest study ever done on it showed that for every .7 lives saved in a thousand, 48 had to treated unnecessarily. But no one ever talks about that when I go to support groups, only about how if we catch PCa early with PSA screening, we can save every man from ever having advanced disease. It's really a fantasy, but I just sit there and keep my mouth shut.

3 likes
Reply

Gregg57, I believe you are falling for their flawed logic. See my post below.

Reply

It seems the argument in the US has been "We as a medical establishment can't control ourselves and will overtreat without employing proper and available diagnostic procedures, so let's not test for PSA at all until it is too late to treat those patients who have aggressive forms of prostate cancer. We will just consider them as collateral damage. "

There is a very simple solution. Instead of refusing to test for PSA, use available diagnostic testing prior to scooping out or burning patient prostates. How hard could that be? LOL

2 likes
Reply

I would definitely agree with that. Hopefully with newer genetic tests and better imaging we can figure out individual cases vs a PSA range and poking blindly for biopsies

Reply

PSA is a simple test, and the results, in few cases, mean you have prostate cancer. It can be compared to taking your temperature. Your temperature, in few cases, means that you are seriously sick.

You guys are saying that there is over treatment and closing your eyes will fix that.

Reply

"PSA is a simple test, and the results, in few cases, mean you have prostate cancer. It can be compared to taking your temperature. Your temperature, in few cases, means that you are seriously sick.

You guys are saying that there is over treatment and closing your eyes will fix that." martingugino

Martin, what you are saying makes no sense. I can't even tell which side of this issue you are on. And your analogy may make sense from your perspective, but to an outsider, it is sort of nonsense.

Would you please restate your position in different words so the rest of us can benefit from what you have to share with us.

thank you

Reply

Thank you for the article. As a caregiver this is a constant, underlying fear For me—rarely voiced—what happens at the end?

We need the knowledge to be prepared. As a teen working in a nursing home I cared for men dying of “bone cancer” from pCa and will never forget their suffering.

Hopefully the pain treatment is much improved from those nightmare times.

There is a lack of such discussion here so maybe it’s more appropriate for caregivers support board.

4 likes
Reply

My husband age 65 at the time, treated with hormone needle and casodex for nine years, now 74 young. cancer came back just recently, had chemo and radiation. He's doing pretty well. please go some where else with all your negativity,please don't take away our hope, we all know the good, bad and the ugly!!!! We are all here for positive support and Knowledge on new treatment, please go away and find a new audience to read your doom and gloom. I personally think your post was mean. Go Away!!

Good Bye!! Lynn, Pa

5 likes
Reply

Thanks Lynn. Migical common sense words. I fully agree with you. David

Reply

What a cheery way to start another day with Stage 4 prostate cancer...not! My only prior knowledge of anyone named Gary Larson is the guy who did the Far Side cartoons. I’m guessing this isn’t the same whacky cartoonist.

Although Dr. Larson prefaces his litany of horrors with “this is what it could be like...” the remainder of the article would lead you to believe that ALL PCa patients who are nearing the end will experience ALL of the horrible events he describes. I kind of doubt that is the case, and I hope and pray I am more right than he is about that. His scare tactics are purely negative, and serve absolutely no purpose in a forum of people seeking positive information and support.

Everyone in here has a slightly different course of the disease, and different response to various treatments. Like Gregg, Dr. Who, and Dan, I choose to do everything possible medically and spiritually to keep the monster at bay for as long as possible, and focus on the gift of life and how blessed I am. Since my diagnosis in 2015 I have had a much greater appreciation for the people and things (not material things) in my life, and how precious and fragile it is. I am encouraged by the recent advances in treatments from r Stage 4 PCa, and that we are getting more attention from researchers who are constantly developing new drugs and treatment protocols. That gives me hope that perhaps someday metastatic PCa will become a chronic disease like HIV...maybe not curable, but controllable for many years with a fairly good quality of life.

When the end nears for me, many years from now, my Advance Directives and Living Will stipulate the administration of as much morphine as needed to keep me comfortable.

Stay positive, my friends, and enjoy the day. 😎

Mark

2 likes
Reply

"Advance Directives and Living Will "

That may not be good enough. Before you get to that stage it would be wise to find a Doc who is willing to cooperate with such a request. Such docs are getting fewer and fewer because of regulatory oversight concerns.

Reply

Are you even reading the replies? Don't you see what people are saying is wrong with your post? Then just go away. Sticking to your guns is one thing, just dont be pointing them at me, please.

Reply

"Are you even reading the replies?" martingugino

I was wondering that very same question of you Martin. LOL. There seem to be many divergent opinions here.

It is possible you may be just listening to what you want to hear? Have you considered that as a possibility?

Reply

"This is an insane post" martingugino

"my blindness to reality. Which I won't go into." martingugino

"stupid post." martingugino

"shitty ass post." martingugino

"just go away." martingugino

"Sticking to your guns is one thing, just dont (sic) be pointing them at me, please." martingugino

1. Martin, here is a humorous youtube video of a primate attacking a mirror:

2. Peer-reviewed research shows that this is what commonly occurs at first. But after a while, the primate becomes self-aware, understands they are seeing themselves in the mirror and they cease attacking the mirror.

3. I would submit that you consider that it might be helpful if you toned down your language. Other peer-reviewed research shows that people tend to respond in kind to the behavior expressed at them by other humans.

Reply

I know some of you wanted to know this but I don’t I’d rather fight the battles one at a time. Just saying

5 likes
Reply

I will stay as positive as I can, as long as I can. I may have some regrets at the end of life, but can't imagine thinking to myself, "I wish I had been more negative."

6 likes
Reply

Hmmm I now know why Docs don't seem to ever share this information with their patients. None of my Docs ever shared it with me. (Some people like faith-based ignorance, I, like many others do not fall into that camp)

It seems to generate fair amounts displaced anger at the bearer... at least from some people. (for those of you who have shared kind and supportive words, in public or private, thanks)

If I was a Doc, after the first few emotional patient reactions, I would shut up on this topic as well. All the more that it needs to shared here, without censorship.

There are a lot of us here with a fair amount of life experience. It seems many of us are perhaps a little too self-absorbed and a little too self-pitying.

I submit that instead of using the autumn of your life sitting around moping, that you instead consider finding ways to use it to help others who may not be as well situated as you. (Or maybe taking the time to research and construct well-drafted information-rich posts for other patients here... it is easy to detract... not so easy to contribute)

Just one person's thought.

PS: For those of you who are seeking positivity boosts, I commend this forum here, which is dedicated to that:

healthunlocked.com/positive...

2 likes
Reply

Just because we don't want to think about the terrible things that might happen to us as we go through the end of life, it doesn't mean we are sticking our head in the sand, choosing to be ignorant. There is a difference between remaining ignorant about something and choosing not to think about it.

I think most of us here are very realistic about what the end of life looks like, and yes it's frightening. We all get that. Not thinking about it is a choice we make to insure that whatever time we have left here is spent in the best way possible. We will all have to face the end of life at some point, but I'm not starting early.

2 likes
Reply

"it doesn't mean we are sticking our head in the sand, "

Maybe not you Gregg. You are pretty thoughtful about things.

But for some others here.... yeah maybe... and for some yeah for certain.... and there are those few who want to impose that type of thinking on others with ISIS-like fanatical zeal to feed whatever internal demons are driving them.

Why??? Human behavior is strange. LOL

Reply

My only thing with posting this , is it is not a representation of what we all will feel, and that I fear some guys would read it without an objective point of view and decide if that was their future rather than live through that,just take the quick round to the head approach when they are doing fine. I hate to lose any more brothers in this disease.

1 like
Reply

1. Removes my head from the hole in the sand....

2. Looks around....

3. Buries my head back in the hole in the sand...

Good Luck and Good Health.

j-o-h-n Saturday 02/24/2008 12:56 PM EST

4 likes
Reply

LOL

Reply

LOL. Reminds me of the time when someone recently said something to the effect that his prostate cancer fighting spirit totem animal was a cross between a big chicken and an ostrich.

2 likes
Reply

There are a lot of people who do live in a fantasy world regarding thier own mortality. I know because I used to be one of them. I think it's part of our survival instinct to block out the reality that we are all going to die. Through sharing my own experiences, I do try to help people in that area IF they are open. But it's not our job here to pop those peoples' bubbles. Sometimes I am actually jealous that they get to live in that mindset and find myself wanting them to feel as bad as I do at times. Wipe that damn smile off your face, don't you know we are all dying!

I do think we should be as positive as we can be, despite knowing what we are ultimately heading for. I'd rather see people living in a fantasy world about death than dwelling on various forms of demise, ruining their quality of life.

Reply

Thank you for posting this, it opened up an important topic for discussion.

1 like
Reply

Read Bob’s cancer blog. Although he has now passed , you can read valuable info on hospice at home. He describes very little,if any pain.

3 likes
Reply

Remember, when read negative thoughts like that , you suffer internally.If it really happens, you suffer again. Why suffer twice.

2 likes
Reply

If you want to read about someone who stayed positive all the way through to the end, read about Timothy Leary who coincidentally died from prostate cancer. I found it quite uplifting to read about someone who was not only positive about experiencing his own death, but looking forward to it and looking forward to sharing the experience with others.

Here's two articles on it:

nytimes.com/1995/11/26/week...

washingtonpost.com/archive/...

1 like
Reply

Gregg, Anotole Broyard who was a NYTimes Literary Critic wrote a book after he was dxed in the early 70s with PCA called “Intoxicated by my Illness” In this also good Blog about APC by Robert V Young he talks about Broyards book here. phoenix5.org/essaysry/rvycj...

1 like
Reply

re/ Timothy Leary and his response,... in the book by James Fadiman Ph.D. called "the psychedelic explorer's guide " he discusses how cancer can lead to depression and that as little as 1/10 of a regular hit of Lsd taken each day, over a short period of time, can raise the attitude to a high level and create a very positive mind set over an extended period of time . i would like to give it a try if and when i can locate some Lsd

3 likes
Reply

Nothing a little cannabis, LSD & oxycontin can't take care of.

LOL

2 likes
Reply

I read that Leary was considering taking a final dose of LSD right before passing, but never did as far as I know. I think he found out how to get there without it.

I did these mind-altering drugs at one time myself in order to "expand my consciousness", but I've since learned that there are natural ways to get to even higher place in your consciousness. And they also have the same positive effect on your mindset.

One of the most powerful I've experienced is having an out-of-body experience during dreaming, also called lucid dreaming. This is a state where you are fully conscious, but experiencing the dream world as a 3 dimensional, hi-def, full-color world, complete with all 5 senses. You can walk around, touch things, talk to people who are often zombie-like, make decisions about what you are going to do, etc. When you wake up, you remember things as if they actually happened in waking life. I spent the short time of the first few repeating to myself how I didn't believe it before making myself wake up. It reminds me of that scene in the Matrix where Neo is touching the chair saying "This isn't real?".

After doing this, I feel amazing for the entire day. Would highly recommend it for anyone to experience.

Reply

I usually only dream during REM sleep. Harder to come by these days with the frequent nightly awakenings with hot flashes and flapping those bed covers off and back on again. Heck, sometimes I'm hardly lucid during the middle of the day, much less when I'm dreaming at night! Ha. Ha. Ha. Ha. Ha.

1 like
Reply

Sometimes, it can be an advantage if you wake up right after the start of REM sleep. This can allow you to go straight back into the dream world without a loss of consciousness. To me, that is the ultimate experience. I've had this experience, like walking from darkness through a curtain into full sunshine in a totally real world.

Reply

For those of you spending too much time dwelling on the downsides of your own circumstances, maybe you don't have it so bad.

Think if you were a child growing up here right now, or an expectant mother:

npr.org/sections/thetwo-way...

Reply

Not surprisingly, reading articles like that one doesn't help me feel better about my own circumstances.

Try spending time each day appreciating everything you have been given and the wonderful gift of life you have been allowed to participate in.

2 likes
Reply

The cultivation of Gratitude - even in the face of circumstances changed by the constraints of disease - is often an interesting and worthwhile process. It brings us closer to the good parts of this wonderful world, and the better parts of our own natures and the natures of the people with whom our lives are interlocked, from birth to death.

1 like
Reply

I have been stockpiling leftover meds but the article stated difficulty in swallowing at the end. Will have to rethink that.

Reply

I read the first line of this post, then I skipped to the comments. We all know that death from this condition is a very real possibility, but I don't feel the need to hear all the scary details. I watched my mother die from cancer, I spent almost every hour day and night with her during her last 5 days. I know what it is like, it's not nice, but I wouldn't give up that time I had with my mum, for anything. Keep fighting hard brothers, I intend to.

2 likes
Reply

My Dad's prostate cancer won at the end. His did through a sarcoma caused by radiation. It was not a bad death. He had a great Thanksgiving and good Christmas with us and was gone on January 8th. His cancer went to his lungs. We did not use hospice as I wanted him to get some supplemental Oxygen and IV fluids. Hospice wont do that. He was comfortable and only out of it the last day.. even then he was responsive. We did some pain meds but not super high doses. I just thought I would share this. I miss him but I don't consider his a horrible death. I believe it is common for Adenocarcinoma to metastasize to the lung. I imagine this death would be similar to my Dad's. Sending you all tons of hugs and prayers. (I do pray for you all every day!)

1 like
Reply

Thanks for sharing. I'm kind of surprised to hear that hospice wouldn't offer oxygen. My wife's aunt had hospice care and she had it in her home. That's something I want to look into for that day when I might need it.

I had a similar experience to yours with my dad's passing. He lived alone up until the last few weeks of his life. Only the last week of his life was spent in hospice and he was fairly comfortable for that. It gave everyone that was important in his life a chance to see him to say goodbye. Once that was done, he departed. All in all, it was about the best way he could pass on. It was nothing like the above description.

Thanks for staying on the group, we all appreciate your support. This is a difficult thing to go through.

1 like
Reply

"The doctor was asked a question and he replied." WayneAin

Thanks Wayne, you summarized the answer to a number of comments in this thread. LOL

Reply

I have read many of the responses to cesanon here, regarding the lack of sensitivity to others on the site who have been recently diagnosed. However, I also read a post that was by the wife of someone who died with many of these complications and she was angry that she was not told of these complications sooner to make more informed decisions that might have allowed her to make decisions that could have made here husband's suffering less, even if it made his life shorter. She asked if anyone was familiar with this and I directed her to his post to know that her husband was not alone.

We all must make peace with our individual situations and stages of the disease and for me, I welcomed the information about what can happen at the end of life, whether or not it happens to me. I am thankful that cesanan, who just "put it out there". I find the posts of moral support for those who have lost loved ones without acknowledgement of all the steps along the way that they have gone through rings hollow.

I still grapple with sharing this with my wife, but I surely will at such time when my health deteriorates in the future and have copied it as a PDF for reference later. Let us both live our lives to the fullest every day but also be realistic about the outcome. We owe that to ourselves and those who love and care for us.

I think this site provides both morale support and knowledge. They are not mutually exclusive.

1 like
Reply

I don't understand all these people calling for these remarks to be removed. Apparently some want to live in candy land where everything is sunshine and roses. I'm looking for truth. Truth of what is coming next for my husband. I don't need to be fed false hope - I need to know what to expect so I can mentally prepare for it. Some things have happened that I didn't know were possible.

He has stage IV spinal metastatic prostate cancer. Has had PC for over 10 years. Went through a cryoablation and years of various radiation treatments and HRT until he became resistant. HRT gave him diabetes. Ureters became clogged so stents were inserted and had to be changed every 4-5 months. One kidney has failed and other is stage 3. Ended up with permanent catheter. Then spread to his spine so had to have Xgeva shots monthly and chemo. Chemo worked until treatment was done them PC came back like wildfire. Then another chemo - which didn't work. Then Xtandi which seemed to be working - PSA was down to almost nothing but suddenly he had trouble walking - needed a cane. A few days later he needed a walker. A few days later he cannot move his legs. Turns out the tumor on his spine was growing just fine even with the Xtandi and now he has no ability to walk so is bed bound. The tumor on his spine is getting very large. Unable to take him for radiology imaging unless by medical transport- which he refuses. Hospice now visits twice a week and I am his caretaker. He's very thin but in fairly good spirits. He eats well (now that he's off chemo) and his pain is well managed. I have to flush the massive amount of blood and gunk out of his bladder twice a day so his last kidney can still sort of function. One day he developed a red spot on his tummy. A few days later he had urine and gunk pouring out if a hole that started as a blister then developed there. Turns out it's a fistula from an old tube he had placed out his tummy from his bladder for only 2 weeks after one of his many surgeries. That thing healed up years ago but the fluids in his body forced their way through his stomach and that old scarred opening until he had a hole and he now has an ostomy bag in addition to the catheter. He's retaining so much fluid his legs are getting huge. Lasix has helped somewhat. We're battling bed sores and I accidentally bumped off a small scab one day and about a pint of liquid came out. As if I'd poked a hole in him and all that liquid just poured out. I didn't know these things happed to the human body. His care is a full time job. This is our reality and I'm just trying to figure out what in the world might happen next. I need truth - not false hope. After the spine where might it go next? What symptoms might he have as it grows in his spine? What symptoms might he have if it goes to his lungs or brain? How much time do we have left? Weeks? Months? Years? Doctors don't want to give you truth - they're afraid to commit to any one answer so you're left in the dark and every new awful development takes you by surprise. I thought this was an informational site. I'd hoped. I actually thought the information posted by this man was helpful.

2 likes
Reply

You may also like...